Holistically MS

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Half & Six

I’ve been adjusting well to my light manual wheelchair. It’s easier to move than my powerchair when I’m in small spaces and easier on my cognitive skills. However I have been doing some manual wheeling over distances to keep my arm muscles in trim…although this impacts upon my arthritis.

Last weekend I tried sit-on-top kayaking. It was such an awesome experience…although for me my arthritis has made me do a uturn on it. However if you have a bit of upper body strength and like water – then try it. Sit-on-top kayaking is easier to transfer in and out of. It’s so natural to go from maneuvering yourself with your arms in a wheelchair to gliding through the water using your arms to hold a paddle. And if you love water like I do or just want to get your upper body stronger then I hugely recommend trying it out. I went to an outdoor centre and tried it in a calm lake…they were really helpful and accommodating. It was lush gliding through the water. What a gorgeous feeling. I had tried this 25 years ago for a few hours and so last weekend was pretty much a new experience. The wetsuit was very weird at first and then I adjusted.

That’s the positive news. Although I have a bit more…last week I met my MS rehab team. They seem to be supportive and helpful. How reassuring. It’s the nhs! Which is a shocker for me and compared to past experiences with the health service here in the UK. However…they are doing lots of tests to see what’s happening and how they can help. Meanwhile I managed to get to an opticians and my MS is creeping in…although some glasses will ease some of my eyesight challenges a bit. So I spent what seemed like an age choosing some glasses. I chose the same frames for both my near and far glasses as they felt so comfy – and I like the look too. I’m hopeful that I will get a bit of clarity with them and perhaps they may ease my eyes a little.

We are in the process of selling our two storey house so that we can move into a bungalow and try before we buy. I’m looking forward to this as we will move somewhere with good buses and some amenities – all assisting me in having some independence.

So there are some positive things which are occuring and this encourages me…meanwhile I’m missing my body working with my mind and missing my mind working with my limited body. You know…it’s a challenge and at the moment this is really starting to piss me off and eat away at me. I’m on the lookout for finding a way to exercise comfortably and enjoyably with my arthritis and MS. I recently tried a hand cycle however it was too big and the ‘pedals’ were too high…so at the Mobility Roadshow I aim to try a hand cycle as an attachment to my wheelchair (if they have this option to try). It may work if the ‘pedals’ are low enough for my shoulders to be comfy. I love being outdoors and so feel that it’s important to be in an environment in which I like. Swimming is a love of mine (outdoors) however my neck thinks otherwise. It’s a wonderful exercise though…as I’m sure everyone knows. I try to do stretching exercises whilst sitting down and I’ve been given a lycra band for building up the muscles between my shoulder blades…as this eases my strained muscles on my shoulders. Wheelchairing obviously uses a lot of upper body muscle…so I try to mix up the manual and powerchair.

Recently had my assessment for an assistant dog…it went well and I had a go with a lovely dog. She was great and it was quite an amazing experience trying out some commands with her. Awwww lovely.

Well…I hope that this blog has been ok to read. I needed to empty my mind and I was also aware that it was time to update my page. I do wish that kayaking was an option for me…as it will be lush to exercise at my own speed, be independent, glide through water…and watch wildlife. My trial last weekend was so great and I hope that this feeling stays with me…I felt alive!